Saturday, 27 July 2013

It's simple: all we want to do is to get our child well again.

Let's face it. All we parents want to do when we present our child in front of the NHS treatment team we've been allocated is to get our child well again - and as soon as possible.

Many of us know nothing or very little about the bureaucracy behind NHS mental health treatment provision - or the various treatment models which may be used on our child.

We just want to get our child well again.

So we assume that the provision is there for us and that it will work. Just as we would if we were - God forbid - presenting our child in front of a cancer treatment team.

During those weeks or months as the penny begins to drop that there is something seriously wrong with our child and we make the decision to take them to the GP... followed sometimes by weeks of waiting for treatment... we may - if we have the time and energy while reeling from the fallout of a child plummeting into an eating disorder like anorexia - have dipped our toes into the water of the vast vault of information out there on eating disorders.

But - like the treatment - we just want to get to the heart of the matter: to find out what is wrong with our child, why it may have happened and how to get them well again - quickly and permanently.

This morning it struck me that there is a ton of information out there, much of it scientific or academic, jam-packed full of treatment descriptions, acronyms, lists of experts, books to read and so on. It can be impossible to know where to start, especially when you're being referred to a plethora of links to other resources which link to other resources and so on...

At the end of the day, we parents usually aren't healthcare professionals or medical scientists. We are just parents of children that we love and want to restore to full health again.

And we want to be sure that the treatment our child receives will achieve this.

Often, we arrive at the first treatment session optimistic that this is it - the first rung of the golden ladder to recovery. A few sessions and - ping! - our child will be well again.

Yet as time goes on (and for some families this clanging realisation dawns faster than for others) we all too often realise that this isn't going to be the case. We are told that our children are "in this for the long haul". And that nothing can be achieved until they arrive at a stage where they "want to get better". If they never arrive at that stage, then there is little that can be done. Sorry but...

So everyone just sits there, bewildered, unsure what to do next, faced with a child that is unable to "want to get better", yet who, underneath, is crying out for help.

And, when we begin - horror of horrors - to doubt the professionals' judgements and treatment methods, in a way that I am sure we would rarely do if it was another illness like cancer, we don't know where to turn. If the treatment team we've been allocated don't follow modern evidence-based treatment methods, then what can we do? And, anyway, how do we "lay" parents know whether or not they're following up-to-date methods? Many of us are not aware that there is a whole range of treatment methods for anorexia, and that some of these are the polar opposite of others.

Radically so.

But, even in the event that we become lay experts on modern evidence-based treatment for eating disorders, here in the UK you're pretty much stuck if your allocated treatment team isn't following that model. On the whole you can't pick and choose treatment like you can in other countries. You get what you're given - or you go private at an eye-wateringly high cost.

And I know this is happening because I've been talking to families during the compilation of my new book "When Anorexia Came To Visit". I have also talked to many other families about their experiences with NHS treatment for eating disorders, some of it excellent, some of it woefully inadequate.

All of the above was mulling over in my head this morning and led to an idea.

It's a pretty big and daunting idea, and will require some more thought and a lot of work on my part.

But the seeds have been sown.

Watch this space...


  1. It IS simple, absolutely. We all want our children to get better. We don't want to be "carers" we just want to be parents of well, happy human beings. Whether there is a simple answer, even with the best of treatment models currently available is another matter.

  2. Very true. Eating disorders are notoriously difficult to treat and every individual is different. But if we could cut through all the stuff that gets in the way of making it as simple as possible to get clued up on the ins and outs of the illness, and be empowered to demand the best for our children - and for the professionals to ensure they deliver the best, then that would be a Good Thing.

  3. Although I admire you and your determination to get your Son healthy, I have a problem with how you compare eating disorder treatment to cancer treatment as you have done in previous posts as well. The Two are completely different.

    1. Maybe I should have been more clear. The point I always try to make is that various very serious illnesses unfortunately have high mortality rates. Eating disorders is one of them, cancer is another, heart disease is another, and there are others. With the latter two, and similar - usually physically based - illnesses, you would automatically expect, and hopefully receive, outstanding treatment from professionals following the latest evidence-based treatment methods. Hopefully you wouldn't be faced with outdated methods or be offered treatment that has a lower success rate, and so on. I know that all these illnesses are different: cancer is different from heart disease, and there are other illnesses I haven't mentioned which are different again. I hope this makes it clearer as to why I have made the comparisons.